Grade 3, an anaplastic astrocytoma

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  • honeycomb1968
    honeycomb1968 Member Posts: 11
    OCMenno said:

    I agree
    PBJ Austin,
    Good for you for being so active and finding this board so soon. I wish I had found it 3 years ago. I waited too long before I started looking for positive stories of hope and survival. The first thing I found on the internet after my wife was diagnosed in 2006 was all about the statistics (most of them far out-dated). I couldn't help but think, "she's going to die...soon, the rest of her time here will be miserable, our children will no longer have a mother, I will grow old alone, etc.". Yes, it is true that this is a horrible, deadly disease, and many lives are cut short, but it is wonderful to see that there are so many people surviving many years and encouragin one another. I thank God for that. We can all learn from each other here. There are times that are almost unbearable, and there are other times that everything is just great. I know it's easier for me to say than most of you, since I do not have the cancer myself, but I just like you to know that I share these things with my wife, who can't read, and it truly does strengthen her to hear about this hope. We also have a strong faith and a lot of support from friends, family, church, even my co-workers and bosses, and all of you.

    Thanks

    survivor
    please see my profile and keep the faith
  • honeycomb1968
    honeycomb1968 Member Posts: 11
    kellbell said:

    My husband has been
    My husband has been diagnosed with the same. He was diagnosed 11 years ago and was tumor free until may. He recently had tumor removed and is doing well. He has just finised his first round of temodor. He has is ups and down days also. Keep your head up high and dont let it get the best of you. Keep fighting every day. God Bless YOu.

    survivor
    would love to chat with you
  • alutiiqmom
    alutiiqmom Member Posts: 256

    survivor
    please read my profile hope it helps

    profile?
    HI:
    My 18 yr. old daughter is doing chemo for Anaplastic Astrocytoma III. It is very hard on her to do the chemo. She cries a lot and is sick a lot. Where can I find your profile to share your survivor story? Thanks for sharing. God Bless.
    email also is: [email protected]
  • alutiiqmom
    alutiiqmom Member Posts: 256

    survivor
    please read my profile hope it helps

    I found your profile (I think)
    Hi:
    I clicked on your picture and it took me to your profile that gives your background. Thank you for sharing that. I am very happy that you are doing well. God Bless you and your family. Thank you for sharing and giving hope to all.
  • diamond24
    diamond24 Member Posts: 5

    How are you doing today?
    Hi:

    My 17 year old daughter has anaplastic astrocytoma and had a tumor on left frontal lobe. She had surgery, and radiation and chemo. Now we are in the maintenance phase of the chemo, which is for a full year. This treatment is make her so sick she can hardly function.

    What kind of treatment did you have and how are you doing?

    Thanks for sharing.

    From: A concerned Mom

    update on your daughter, son has it too
    Hi,
    My 17 year old son was also diagnosed with A astrocytoma III. It was a small tumor by his
    thalamus. It was removed by an amazing surgeon. He had surgery in May, Proton radiation therapy for 6 weeks and is currently on his 3rd round of Temodar. (5 days per month, after taking it with radiation for 42 days.) His tumor was very difficult to diagnose and they are now certain it is from previous radiation he has had from two other tumors at age 5 and again at age 12. Hi MRI is clean at this time and he has no deficits at all. He is doing well on the temodar(fatigue, nauseated but controlled) Blood counts a little low but not bad. What is the dose of Temodar(if that is the chemo) my son takes 360mg per day x 5. Do you give her anti nausea meds? My life has been devoted to taking care of my son with Cancer and he truly is a walking miracle. He will continue with the chemo for about a year and have MRIs every two months for a while. Prayer, family and faith has helped us and I hope it can help you too.

    My best to you and your daughter.

    dd
  • alutiiqmom
    alutiiqmom Member Posts: 256
    diamond24 said:

    update on your daughter, son has it too
    Hi,
    My 17 year old son was also diagnosed with A astrocytoma III. It was a small tumor by his
    thalamus. It was removed by an amazing surgeon. He had surgery in May, Proton radiation therapy for 6 weeks and is currently on his 3rd round of Temodar. (5 days per month, after taking it with radiation for 42 days.) His tumor was very difficult to diagnose and they are now certain it is from previous radiation he has had from two other tumors at age 5 and again at age 12. Hi MRI is clean at this time and he has no deficits at all. He is doing well on the temodar(fatigue, nauseated but controlled) Blood counts a little low but not bad. What is the dose of Temodar(if that is the chemo) my son takes 360mg per day x 5. Do you give her anti nausea meds? My life has been devoted to taking care of my son with Cancer and he truly is a walking miracle. He will continue with the chemo for about a year and have MRIs every two months for a while. Prayer, family and faith has helped us and I hope it can help you too.

    My best to you and your daughter.

    dd

    Temodar question
    Hi Dimond:
    My daughter is doing better. We switch oncologists and that made a big difference. The new doc gives her a little decradon with the infusion and that seems to help the nausea.
    Sarah is on the same plan for Temodar. She takes an infusion 2x a month and on the last infusion we take pills at home for five days. The temodar is 400mg. a day. The infusion is Avastin and Irinetecan.
    Today, the doc said she wants to stop the Temodar because Sarah does not tolerate it well. We are very afraid to do that. We have had two good MRI's. We are supposed to follow this plan until next May, but now they want to stop the Temodar. What do you think? They think it makes her too sick and they cannot say for sure it works. They know the Temodar works inconjunctin with the radiation, but apparently no studies have been done on this part. Please let me know what your doctor says. Sarah has the Anaplastic Astrocytoma 3 too. God's blessing to you all.
    Edna
  • alutiiqmom
    alutiiqmom Member Posts: 256
    momsworld said:

    good luck with your MRI. my
    good luck with your MRI. my only child 13yr has AA3 and it has been a long road, She was diagnosed March 27 2010 and has been through 4 brain surgeries and multiple other surgeries related to this evil disease. On a brighter note, She just had her 4th clear MRI. no evidence of disease. 10 months cancer free. Don't give up. this is your new normal and that's ok, what is normal anyway? everyone has something to deal with, this is our thing. One day, you and my daughter will be wearing something that say 'Brain cancer survivor'. Stay strong and never give up hope. Everyday there are new things being discovered for this and I have faith that God will take care of all of us

    checking in
    Hi:
    I remember we blogged before. How are you all doing? I hope you are both doing well. I cannot remember if you told me the medicine your daughter takes, do you mind telling me?
    My daughter is taking two infusions a month of avastin and Irintecan. Then we take 400mg. of Temodar for five days a month. They want to stop the Temodar because it makes Sarah so sick, but I am scared to stop it because we have two good MRI's. What have you heard on Temodar? Thanks for sharing and God Bless you both.
    Edna
  • momsworld
    momsworld Member Posts: 135

    Temodar question
    Hi Dimond:
    My daughter is doing better. We switch oncologists and that made a big difference. The new doc gives her a little decradon with the infusion and that seems to help the nausea.
    Sarah is on the same plan for Temodar. She takes an infusion 2x a month and on the last infusion we take pills at home for five days. The temodar is 400mg. a day. The infusion is Avastin and Irinetecan.
    Today, the doc said she wants to stop the Temodar because Sarah does not tolerate it well. We are very afraid to do that. We have had two good MRI's. We are supposed to follow this plan until next May, but now they want to stop the Temodar. What do you think? They think it makes her too sick and they cannot say for sure it works. They know the Temodar works inconjunctin with the radiation, but apparently no studies have been done on this part. Please let me know what your doctor says. Sarah has the Anaplastic Astrocytoma 3 too. God's blessing to you all.
    Edna

    AA3
    my daughter took the temodar along with the radiation and the cancer came back. She was on a treatment that included avastin and she has been cancer free for almost 1 year. Good luck in making the decision to stop temodar, I know it is scary. When I had to make the decsion to cut down to partial treatments for my girl I was very scared but I had to take a good look at her and see what kind of quality of life she had, missing school all the time, being sick all the time etc. Not knowing what the future holds for her, I want her to be happy and healthy now. I want her to enjoy herself and have fun now. If you believe in prayer, God will help you make the choices you need to make and he will also let you be at peace with those decisions
  • alutiiqmom
    alutiiqmom Member Posts: 256
    momsworld said:

    Dear alutiiqmom
    Hi there, my 13 yr old daughter has been diagnosed with AA3 also. She was 12 when she was diagnosed. We found her tumor only after I demanded a ct scan from her pcp. She had surgery 4 days after. 4 days after that she had her 2nd surgery to remove tumor that they couldnt get to at the first surgery. Once her incision was healed she went through 35 radiation treatments and was taking Temodar. That was july 2010. In Sept 2010 she had her 1st MRI and there was signs of new growth. She had her 3rd surgery. At that point, her doctors told us that there was nothing more that they could do and to enjoy my time with her. I told them to go to -ell. I took all her records and left. She now goes to the jimmy fund clinic/dana farber in boston mass, she is on a 5 drug regimen costisting of 2 oral chemos that she takes everyday and IV avastin every other week. She has been cancer free for 7 months. I do know of a clinical trial that someone we know is on, it is an injection of an HPV virus that is injected into the tumor. So far his tumor has shrunk by 50%. We also are christians and believe that God is walking with us through this journey. I want you to know that you are not alone and if you EVER need to talk or vent, I am here for you. God bless you and your daughter

    contact information
    Hi Momsworld:
    Could we email each other? My email is [email protected] I know you replied before and told me your daughters medicine, but I can't find that post. We finally had too good MRI's but now they want to take our daughter off of the Temodar and we are concerned and confused. How long was your daughter on Temodar? What does she take now? Thanks for sharing and offering supporting. God Bless you and your daughter.
  • goodboy said:

    anaplstic astrocytoma
    hi
    my 6 year old son just completed treatment for anaplastic astrocytom grade 3. we joined a clinical trial since standard treatment (tamezolide) is not so promising. Thank G-d we just finished and his last MRI came back clear. Dr. Dunkel at memorial Sloan Kettering is conducting this study- I'm not sure if you fit the criteria for the study- or if the study is still 'open' but worthwhile to look into. I keep reading about people who had AA- but they were all adults- if anyone has information about a young child I would love to connect with them.

    good luck

    My 6 year old cousin
    Dear Goodboy,

    My 6 year old cousin has ananplastic astrocytoma, grade 3 with grade 4 characteristics. It would be so helpful if you could speak directly with the mom. Is that possible? They are coming to NYC on Wednesday and slated to see Dr Garvin at Columbia Prebyterian. I read your comment and felt hopeful that Dr Dunkel at Sloan Kettering might also be helpful. Any more advice? The mom is distraught. I don't know how to comfort her. Please let me know if you feel comfortable speaking with her.

    Concerned Cousin :-(
  • Candice T
    Candice T Member Posts: 3
    DLB21 said:

    A Good Report on Type 3 Astrocytoma
    My son is Janet McCoy's nephew. He was diagnosed with an Astrocytoma in December 2008. He underwent 14 hours of brain surgery at MD Anderson in Houston. As his parents, we were scared to death. The doctors have to tell you all of the things that may happen. I am happy to report that he came through the surgery in great shape. He talked to us on the phone during the surgery as he was awake for about 8 of the 14 hours. Most of the tumor was graded as Type 2 but there were some Type 3 cells so the doctors recommended radiation. He went through that and was the classic case. The early weeks went quite good with a little loss of appetite. The last two weeks were rough. He was extremely tired and the treatments left him very nausious. He had a little problem with his balance but physical therapy did wonders for that. As I write this 3 years and 7 months after surgery, I am happy to report that he has done marvelously well. He and his wife have had a second child, who is now 21 months old. My son was able to go back to work shortly after his radiation. His health was wonderful before the tumor and has been pretty much the same since then. He now has MRI's every 4 months. We are all on pins and needles the week of the test but, thank God, each MRI has shown no change since the surgery. He leads a very normal life except for that one week every four months. On that week, we are all brought back to the fact that we are mortals. But our faith carries us on.

    An AA survivor of 8 years
    Ya know, the Lord uses the horrible things in life to purify and bring us closer to Him. I'm glad I now have a testimony to how amazingly wonderful He is. Your son will be in my prayers!
  • Candice T
    Candice T Member Posts: 3
    Grade 3 Anaplastic Asrocytoma Survivor!
    I am a grade 3 astrocytoma survivor. I was diagnosed with grade 2 astrocytoma when I was 17. After two surgeries, the latter at Duke University Brain Tumor Center, a 95 percent resection, I was given a pretty good prognosis with no treatment and the hoping that what was left would become dorment. Three years later in 2003 it started growing back. After another surgery it was found to be malignant and grade three. Dr. Alan Freidman (sp?) removed all he could see, but 6 wks of radiation and one year of chemo, a pill form, followed. I am a person of strong faith in Christ and kept a very positive attitude throughout the whole process. I believe that and the treatment are the reason I am still alive today. There is hope even if statistics say otherwise! God bless you all and you will be in my prayers. :)
  • Candice T
    Candice T Member Posts: 3
    ChristyM said:

    I do not take the prognosis
    I do not take the prognosis information to heart. I never asked about it actually! I read enough on the internet, but I know that most of those compiled statistics are from older studies, that dont necessarily tabulate in all of what is available for treatment now. And remember there are no guarantees in life, for example, that since statistics say it can come back DOESNT mean that it will. I have read stories from people on the national brain tumor foundation who have battled GBM and have made it many years SO FAR. Still alive and kickin!
    I was diagnosed with an anaplastic astrocytoma in May of this year.

    To ChristyM
    I think that is the best way of looking at it. I asked my doctor 8 years ago what my chances were and he said, "Candice, grade three Astrocytoma...not good", and I felt a little voice inside my soul from the Lord tell me "You are going to be ok. You are not a statistic". You keep your head up and trust in Jesus. He can bring you through this just like He did me. There is ALWAYS hope when we have faith! I will pray for you!
  • alutiiqmom
    alutiiqmom Member Posts: 256
    Candice T said:

    Grade 3 Anaplastic Asrocytoma Survivor!
    I am a grade 3 astrocytoma survivor. I was diagnosed with grade 2 astrocytoma when I was 17. After two surgeries, the latter at Duke University Brain Tumor Center, a 95 percent resection, I was given a pretty good prognosis with no treatment and the hoping that what was left would become dorment. Three years later in 2003 it started growing back. After another surgery it was found to be malignant and grade three. Dr. Alan Freidman (sp?) removed all he could see, but 6 wks of radiation and one year of chemo, a pill form, followed. I am a person of strong faith in Christ and kept a very positive attitude throughout the whole process. I believe that and the treatment are the reason I am still alive today. There is hope even if statistics say otherwise! God bless you all and you will be in my prayers. :)

    thank you Candice T
    Hi,

    My daughter was diagnosed with Anaplastic Astrocytoma 3 at 17. They resected 89-90%, then she had radiation. We are currently undergoing chemo for one year also. So, I really appreciate you sharing your story to help others. It gives me hope to read of others who are living on and surviving this illness. I know that our faith is really carrying us and I am grateful for our believe in God everyday. God Bless you. Enjoy every moment of your life. Happy Thanksgiving.
    Edna
  • lovenitu
    lovenitu Member Posts: 1
    DEAR JANET
    MY WIFE HAS BEEN DIAGNOSED WITH SAME TYPE ON THE 12TH OF NOVEMBER.LOOKING FORWARD TO LOTS OF MORAL SUPPORT.
  • Rodgers313
    Rodgers313 Member Posts: 1
    goodboy said:

    anaplstic astrocytoma
    hi
    my 6 year old son just completed treatment for anaplastic astrocytom grade 3. we joined a clinical trial since standard treatment (tamezolide) is not so promising. Thank G-d we just finished and his last MRI came back clear. Dr. Dunkel at memorial Sloan Kettering is conducting this study- I'm not sure if you fit the criteria for the study- or if the study is still 'open' but worthwhile to look into. I keep reading about people who had AA- but they were all adults- if anyone has information about a young child I would love to connect with them.

    good luck

    Want to connect with goodboy
    Want to connect with goodboy regarding dunkel trial
  • alutiiqmom
    alutiiqmom Member Posts: 256
    KMPonder said:

    Fantastic!
    Stay well, Danny! So glad to hear this. Hubby just got off Temodar after 10 mos at 450 mg. He'll have MRIs every two months for this first year. We pray the same results of clean MRIs for the next 50 years! :)

    what kind of cancer?
    HI KM Ponder-

    What type of brain cancer did your husband have? I am sorry for your loss. May God comfort you during this difficult time.

    Edna
  • BuzzyBee1208
    BuzzyBee1208 Member Posts: 6
    3 years
    12/10/11 3 year b-day. I have read that 14 years is the new goal to beat IM working on it. Everycase is diffeent If he is doing good God is Good.... Eat cancer fighting food cut out as much red meat as possible NO NO sugar and starch. I dont know much but I am willing to share what i have learned.
  • BuzzyBee1208
    BuzzyBee1208 Member Posts: 6
    cushla69 said:

    christy i was diagnosed with
    christy i was diagnosed with AA3 in Nov 2010. ure statements r very true. would like to talk to u. Imma still alive and kickin also. Got to, my lil girl depends on me.

    Keep up the fight.

    Keep up the fight.
  • BuzzyBee1208
    BuzzyBee1208 Member Posts: 6
    Candice T said:

    To ChristyM
    I think that is the best way of looking at it. I asked my doctor 8 years ago what my chances were and he said, "Candice, grade three Astrocytoma...not good", and I felt a little voice inside my soul from the Lord tell me "You are going to be ok. You are not a statistic". You keep your head up and trust in Jesus. He can bring you through this just like He did me. There is ALWAYS hope when we have faith! I will pray for you!

    3-6 months Doc says
    kicked him out of my room and I told him that was not enough time. Doc 2 gave me a year. My current doctor says I am doing 99% better than most of his patients. God Is Good. 3 yrs and counting.. astrocytome grade 3.

    I have been told -researched a little that this type of cancer: hereditary and less than 3% are woman under 50. Anybody in my boat? Lets chat share info